Death Highlights Painful Condition

Dec. 11, 2008

By JOSEPH BROWNSTEINABC News Medical Unit

The arrest of a British policeman's wife on suspicion of the "mercy killing" of her ill daughter has drawn attention to a controversial and often misunderstood condition, known as myalgic encephalomyelitis (ME).

Kay Gilderdale, 54, of Stonegate in East Sussex, is suspected of being involved in the death last week of her daughter Lynn, 31, according to reports in British media. She was reportedly released on bail as police investigate the case.

Tony Britton, a publicist for the ME Association in the United Kingdom, said that while a doctor with the organization has been in touch with the Gilderdale family, the family was not speaking with the press and it remained unclear if they had hired a lawyer.

ME, which is often used synonymously with chronic fatigue syndrome (CFS), is characterized by symptoms that can include, as the name suggests, a lack of energy, as well as flu-like symptoms. It affects women much more often than men.

The diseases are similar to others, like irritable bowel syndrome (IBS) and fibromyalgia, in that the diagnoses can often overlap and a cause of the symptoms can be difficult or impossible to pinpoint medically.

Nonetheless, doctors, say, the illnesses themselves are quite real.

"It's not a disease as much as it is a broad spectrum of feeling awful," said Dr. Nortin Hadler, professor of medicine and microbiology/immunology at the University of North Carolina at Chapel Hill, and author of the book "Worried Sick: A Prescription for Health in an Overtreated America."

"Essentially this is one spectrum of feeling really awful and having a tremendous number of unpleasant somatic experiences," Hadler said.

The number of people suffering from the illness remains unclear. A 2007 study by the CDC found that 2.5 percent of people aged 18 to 59 in Georgia were suffering from the ailment, although the researchers noted that this was eight to 10 times higher than previous estimates.

The Yuppie Flu

The disease has been pejoratively called "Yuppie Flu" because it was thought to afflict upper class women, Hadler explained. But while those women may have been the ones getting most of the treatment, studies have found that these symptoms afflict all social classes at equal levels.

However, patients with these ailments may still face a stigma because they are perceived to be faking their illnesses.

Fake Illness Stigma

Cynthia Touissant suffers from fibromyalgia, and runs the advocacy organization For Grace, which represents women suffering from a variety of chronic pain problems.

"That's what's so frustrating about chronic pain, it's so hard to get the right diagnosis," she said of her condition. She currently uses a wheelchair and said that among her worst symptoms is the inability to sleep some nights.

"The first thing I always say in the morning is 'maybe I'll sleep tonight,'" Touissant said.

She also suffers from persistent pain in her waking hours.

"It feels like I've been doused in gasoline and lit on fire," she said.

While recent symptoms have made her suspect she might also have CFS, Touissant fears having a doctor confirm her suspicions.